An Australian boy's fight against Neuroblastoma, a lethal childhood cancer

Sunday, June 18, 2006

Isolated from RMDH

We have had a few dramas this week, Dylan is fine though. We had a great time a HersheyPark on Saturday with a large group of us from the house, the weather was fantastic. When we returned back at the house by around 9pm, we learned that one of the children who has been staying at the house for the past 2 weeks was admitted into hospital with chicken pox. This of course is of major concern in a house full of children having cancer treatment. So on Sunday many of us spent the day in Urgent Care having a 4 hour infusion of intravenous immunoglobulin otherwise known as IVIG to boost the immune system in case they have been infected. Dylan and I spent 7 hours in Urgent Care, waiting to be accessed and for the infusion to be ordered. Dylan is thankfully not neutropenic during the Cetuximab therapy, so if he does get infected with the Chicken Pox, it will not be life threatening. The biggest issue of the situation is that it has delayed his upcoming treatment. Dylan and I along with many other families have now moved out of the Ronald McDonald House until the 4th July to prevent an epidemic outbreak in the house. Dylan’s chances of developing the Chicken Pox is slim but if he does, it will occur in the next few weeks and he will then be admitted into hospital under strict quarantine conditions. The hospital could not keep our room at the Ronald McDonald House and pay for a hotel for us to stay in, so we have gone to stay with Greg and Lynn in Long Island, thank god for good friends. Dylan had his final cycle of Cetuximab on Monday and has officially ended that clinical trial. He was scheduled for surgery to have his lymph node removed next week followed by high dose chemotherapy but that has now been delayed until he is out of quarantine on the 5th July, so hopefully a date will be set for that week. I was concerned about Dylan having no type of therapy over the next few weeks but Dr Modak said that he felt very confident that Dylan will remain stable. On Friday Dylan had his 6 weekly MIBG scan and Dr Modak said he would call me with the results on Monday as Dylan is also quarantined from the hospital until 5th July. Dylan is not at all upset, he is now splashing around in the pool with Thomas, in the backyard, it’s 93 Fahrenheit today (about 33 Celsius) Luckily Thomas has been immunized against the Chicken Pox, so he is under no threat. So, here we are with a little vacation, no hospital visits and no treatment for a few weeks, it’s kind of strange and a little scary for me. It will be good for Dylan to have this time, because the upcoming high dose chemo will not be kind, but I think it is worrying me more than it is worrying him. Nana left for Australia on Wednesday, it was a sad good bye, thank you again to Select Comfort for making that dream come true for Dylan. Good news, the half hour documentary about Dylan, now has a scheduled air date for Australian viewers. It will be on channel Seven at 8pm on Sunday July 9. Dylan’s story will be episode one of the series “True Stories”. I will let you know if this date changes, but it is very unlikely, so keep this date in your calendar.